At this point it's almost like the BFS gods are playing some kind of cruel joke on me. I don't understand what I did to them to deserve this.

I was just at arguably the best hospital in the nation three weeks ago and was given the all clear from having anything bad.

Now I sit here just three weeks later trying my best to not question things I don't understand.

Two weeks ago I started to get pain, burning and numbness on the nerve on the outside of my right foot (of course the side they did not EMG). This is very uncomfortable and bothersome, tough to ignore. Now this morning, the pain and burning has traveled up the nerve path to the knee where today I have pain and burning on the side and back of my right knee.

I hate this *beep* so much. I am doing my best to not worry about the wrong things.

I know this is a stretch but does anyone have or had anything similar or any ideas on what to do at this point?

My GP will send me to a neurologist if it doesn't resolve and that's the last place I want to go to.

Gregory, Have you looked into the Ehlers-Danlos stuff? I totally blew it off at first, but the thing that Gabrielle R. posted on FB this week made things so much clearer. I do not think I am probably full-blown, but soooo much applies if I think about it. For example, the nerve on the outside of the knee, running down...yes, the one that causes footdrop...Well, I was walking on the beach a few weeks ago and had the sorest area on the top of my foot afterward..for days and days. I didn't think much about it at the time, not even relating it to bfs. Eventually it passed. It was bad going down steps for well over a week. Several days after it passed, somehow I noticed that if I pushed and kneaded the area on the side of the leg/knee where this nerve originates, the top of my foot would hurt again. It is one of the specific things mentioned in the article posted by Gabrielle. I am not sure if this is the same nerve to what you refer. But its like the ligaments in the foot are all loose. You have bunions by any chance? I think Gabrielle has a mild case also and yet had horrid twitching. There are 11 types and quite a spectrum of severity. I am thinking my own is somehow related to that type of thing...about which little is known. I had a patient in my job at ER with Ehlers-Danlos...the doctor was totally blowing her off, but she clearly was really suffering. Doctor was treating her as a malingerer, but there was ZERO secondary gain, so I advocated for her and she ended up being admitted to the hospital. So much to learn, but still benign! I think some with the EDS are really athletic, and some not at all. Seems complicated yet good to know here is yet another possibility. Several who have gone to Mayo received a diagnosis of EDS, or dysautonomia, or POTS it seems...these are all related. Do you remember any mention of this? Seems with more answers come more questions. Hang in there. You're good. While docs don't know what it is that we have, the important thing is that THEY KNOW WHAT ITS NOT

Matthew 6:27 Who of you by worrying can add a single hour to his life?

My advise is to not worry about it at all, and only resort to going to a doctor again if it gets to the point where you can't stand the pain and you need them to give you something. I also predict that it will resolve on its own in 1 - 6 months (and will then resurface at an undetermined time in the future).

Cheers,Bill

A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein

Bill, of course I should have listened to you. But the pain got to a point that it hurt to walk and couldn't exercise. I did stop and see my neurologist buddy who happens to be one of the leading specialists for ALS in this country. I was in town and he had an opening that week. Got lucky.

He did confirm that it was sural neuritis. He was able to prescribe some lidocaine patches to help with the pain. I didn't know they existed but they are quite awesome.

He confirmed that this was an ancedotal finding and not related to BFS or anything else. He also confirmed that it was totally normal to have increased twitching when an area is injured as well. Stuff we all knew. Thanks for the replies folks.

Buzz, I mentioned to him the recent findings and reports on SFN and twitching. He seemed very interested. He said that SFN is usually not difficult to dx as most his patients always had the burning toes and feet. I don't have that, so he said that a biopsy wasn't really warranted. I am not giving up on SFN, but just an FYI

"The sural nerve runs down the back of the leg, behind the outside edge (lateral) of the ankle and along the outside of the foot. The nerve provides sensation to all those areas and the 4th and 5th toes. The nerve can develop neuritis as a result of an injury, irritation, or inflammation."

There's that pesky word again.

Unfortunately medical doctors don't have an ounce of training when it comes to systemic inflammation or how to handle it. They will only treat symptoms. If something burns or hurts, give it a pain killer, etc. The cause is not addressed. Whether its a constantly triggered immune system that has gone haywire, inflammatory cytokines that simply wont settle down, cortisol and adrenal dysregulation that are pumping out stress hormones willy nilly, intestinal inflammation due to years of stress, inflammatory diet, stimulant abuse, overexercise, or any combination of these... or any number of other similar *true causes* of inflammation.

At the risk of sounding like a broken record, I would start seeing an "Integrative Medical Practitioner" (google them in your area) and tell them you have a disorder of systemic inflammation. Take their advice seriously, and follow their instructions. I truly believe this is the only way to heal BFS.

As a side note, one of my first symptoms with BFS was (what I assume to have been) Sural Nerve problems. This is when I was at my worst with my body in a state of absolute disorder.